This is the essay I submitted to the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) for their 2013 Children’s Scholarship Award contest. I hope you enjoy it! And here is my profile on the NJCTS website.
I imagine that if I were standing in a big, glass box, someone might examine me. I’m sure they’d note my thick blond locks and my unusually pale skin. I’m sure after a few minutes of watching me closely, they’d notice something unusual.
Facial grimaces would be the first. Then they may witness very loud, very harsh coughing. Next, they may even see something that makes them cringe — me, either knocking my knuckles to my throat and pushing nearly to the point of suffocation, or perhaps me digging my nails into the inner corner of my eyes.
What they wouldn’t know is that I’m an accomplished artist, a class president, a varsity cheerleader, a humanitarian of sorts, and a future nursing student at Villanova University. None of that would be apparent, I suppose, because someone examining me would be fixated on the constant movement.
When I was in late elementary school and early middle school, I was in constant and unbearable pain. I choked myself, gouged at my eyes with my fingers, coughed loudly and hoarsely, and chewed my fingers until they bled. These habits were not only unsanitary but extremely painful, and as anyone who’s been through middle school can tell you, it feels like three years of standing in a big, glass box, where everyone examines you.
Naturally, I received constant ridicule from my peers. They mimicked my facial expressions and giggled while they held my hands down so that I couldn’t touch my eyes. Camouflaging yourself is the best defense to the cold reality of middle schoolers — but that was pretty much impossible for me.
I begged my mother to take me to different types of specialized cotors. Hours of driving and uncomfortable testing always ended with false diagnosis or recommendations to a different specialist. Finally, when I was 12, a neurologist diagnosed me with Tourette Syndrome.
Dealing with my “tics,” or involuntary movements caused by the disorder, was only half of my battle. After my diagnosis, I was placed on a combination of medications that left me nearly unable to function — the side effects of the drugs caused me to miss about two days of school every week because I was so physically drained that I was unable to reach a fully alert and waking state.
I could no longer climb stairs, join my family at dinner or focus on my favorite television shows. As someone who was usually so full of life, it was detrimental to anyone who knew me to witness this time in my life. The laughter that was so signature to my existence had just ceased. It was as if I had turned into a ghost.
Only a few months later, I decided I did not want to be on medication anymore, but even then my struggle didn’t end. My doctor refused my mother’s phone calls in which she pleased for him to take me off the medication. In the end, my mother had to carefully lower the dosages herself — a practice that could’ve had serious health repercussions.
After weeks of suffering withdrawal from my medication, I was finally back to my normal self — tics and all. This time, I chose to live with my tics because I realized the biggest obstacle about having Tourette wasn’t the pain of embarrassment. Rather, the true obstacle was accepting who I was and that my potential as a person was not defined by my neurological disorder.
By overcoming this enormous obstacle in my life, I learned that I am an independent and strong person. Instead of letting such a physically and socially disabling disorder hinder me, I stood up against Tourette Syndrome. I stood up in front of hundreds of fans every Friday night to cheerlead for the Ridge Red Devils football team. I stood up in front of my peers many times as the president of the senior class. And this month, I stood up at the podium during the Class of 2013 commencement ceremony and addressed my class one last time.
I broke through the stereotypes given to people with Tourette — that they have learning disabilities, that they will be social outcasts, or that they’ll never be allowed in public. Instead of being regarded as an unruly student who couldn’t sit still, my teachers saw my passion for learning and wanted me to succeed.
After years of being harassed over my perceived social incapabilities, I gained back respect from my peers, and my close friends celebrated my unique qualities. Even though throughout high school I made involuntary vocalizations and body movements, I stood out of the crowd for a different reason — I stayed true to myself and accomplished everything I set out to.